ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

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Send news, announcements and comments to gbloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

 

NEWS BULLETIN
21 July 2003

OAARSN NEWS AND COMMENT

Comment from Tracy Beck, OAARSN network member:
One article that was linked in the most recent OAARSN mailing came through to me with a clear message about the enormous need for more individualized / personalized supports. The title link reads: "Danny Muller (29) who is non-verbal and lives in a group home, speaks through his art". The story was originally posted on FamilyNet. 
At first glance, it comes across like a pleasant little feel-good article about a man who has
found his "voice" through art. That is until the reader reaches the final four paragraphs only to
learn that others have apparently casually and perhaps not so casually, silenced him. The
casual decision made by his group home staff that his art is "too messy" for their house is
utterly astonishing. Furthermore, while I can't speak to the specifics regarding his need for
medication, I am truly left wondering whether the side effects might be far worse than the
condition itself. As an adult who uses her voice to articulate thoughts and emotions, it
would have to be pretty dire circumstances before I would tolerate medication that cut off my
ablity to communicate in the manner to which I'm accustomed. Is there really someone who speaks for Danny--a man without the means to succinctly express himself? 
Look up the story: Man with autism a noted artist

Please note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins that are archived on our website. Click for the list of OAARSN bulletins.
 

Click for the latest  ASPIRE update 

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AUTISM IN THE NEWS

New insights into autism
A new study in this week's issue of the Journal of the American Medical Association finds that a small head circumference at birth followed by a sudden growth spurt of the head before the end of the first year is a reliable early warning sign of autism. This story in The Wall Street Journal.

Could a too-male brain be one cause of autism?
Another story about Simon Barol-Cohen's new book--this one from The Wall Street Journal.

New Child Disability Benefit (CDB)
The Canada Customs and Revenue Agency (CCRA) has announced the implementation of the new Child Disability Benefit (CDB) for children who have a severe and prolonged impairment. The first payment of the CDB supplement will be issued with the March 2004 Canada Child Tax Benefit (CCTB) payment and will include a retroactive amount from July 2003 to March 2004 inclusively. 
The CDB is a tax-free supplement, for eligible recipients, to the CCTB and the Children's Special Allowance. It helps families with the cost of caring for children under the age of 18 who have a severe and prolonged mental or physical impairment. The CDB will provide up to $133.33 a month in financial assistance for each eligible child.
The CCRA will automatically calculate and include the CDB in the payment in March 2004 for families who have already submitted Form T2201, Disability Tax Credit Certificate. They will not have to complete any other forms. 
If you receive the CCTB for a child with a severe and prolonged mental or physical impairment but have not submitted Form T2201 on behalf of that child, please complete the form, get it signed by a qualified person, and send it to your local tax centre.
To find out if your child is eligible for the CDB, please see the eligibility conditions outlined on Form T2201. Families with an eligible child who have not submitted Form T2201 are encouraged to apply as soon as possible to prevent delay when payment of the supplement becomes effective.
To get a copy of Form T2201 and for more information about the CDB supplement, the conditions for eligibility, and how to apply, visit the CCRA's Web site at www.ccra.gc.ca/benefits, or call the CCTB enquiries line at 1-800-387-1193.

Project to Improve Educational Practice and Outcomes with ASD 
Do you work with children and young people with Autistic Spectrum Disorders (ASD) and want to improve education practice and outcomes?  A two-year research project is underway in New Zealand, using a research method called participatory action research (PAR). PAR involves a range of people - including families, whänau and educators - who investigate and share effective education practice in order to understand what works and why; and what does not work and why.  The Ministry of Education leads the project in collaboration with the Ministry's ASD reference group. The project is run by the Christchurch College of Education and the Donald Beasley Institute. To learn more about the project, go to: www.minedu.govt.nz/goto/ASD

Children under 18 shouldn't be on Paxil, drug-maker and Health Canada warn 
Canada has followed in the footsteps of the United States and Britain, instructing doctors and parents that children under 18 shouldn't take a popular anti-depressant because it appears to trigger suicidal thoughts in some adolescent users. 

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event 
 Contact information to learn more about event 
 Please Do Not Send Files Or Brochure Attachments

July-August 2003
CYCLE FOR AUTISM : Help Solve the Puzzle 
Beginning on July 5th, 2003, John Keating and Luc Vandeermeeren, both fathers of children with autism Autism Spectrum Disorders (ASD), embarked on a bicycle journey that will take them from one end of Canada to the other. They began the cycle in Vancouver, British Columbia and will end in St. John’s, Newfoundland. It will take them 8 weeks to complete this journey. They will stop in many cities along the way. Our goal is to promote awareness of Autism Spectrum Disorders (ASD) and raise $1,000,000 in Canada for ASD research through an
annual cross-Canada Cycle for Autism. The Cycle will begin July 5 to August 24, 2003 with fundraising events held in various cities across Canada including Vancouver, Calgary, Regina, Winnipeg, Ottawa, Toronto, Montreal, Halifax and St. John’s. These events will not only raise funds but increase public awareness as well. Please click for the Cycle for Autism website. 

Cycle for Autism is coming to Ottawa
Luc and John will be riding through Ottawa on August 11th.  In order to raise money to support this incredibly important cause, ASO Ottawa will be hosting a "Cycle for Autism Benefit Concert" at Centrepointe theatre on Saturday August 9th at 7:30 p.m.  All tickets are priced at $15 (plus
theatre surcharges).  The concert will feature many talented local musicians who have volunteered their talent and time to support the cause.  All proceeds will be donated to Cycle for Autism, with 10% being gifted back to ASO Ottawa Chapter. 

How you can help:
1.  Tickets for the concert are on sale as of today at the Centrepointe box office, 101 Centrepointe Drive, Nepean.  Tickets may be purchased in person, or by phone at 580-2700 or Toll-free: 1-866-752-5231 (summer hours) 11 a.m. - 3 p.m. Mon. - Fri. (closed weekends). Tickets can be purchased online at www.centrepointetheatre.ca PLEASE SPREAD THE WORD.  Encourage your families, neighbours and co-workers to attend.  Attending the concert will not only provide a great evening of entertainment, but will also provide a very public forum to show our support for autism and the Cycle.  

2.  Be a pledge rider.  Go to www.cycleforautism.com for details on how to sign up.  There will be a 10K ride-along pledge ride on Monday August 11th as the riders enter Ottawa.  The ride will begin at 4 p.m. and conclude at 5 p.m. at the rally at City Hall.

3.  Plan to attend the rally. We hope to have a number of families, friends and supporters on hand to greet the cyclists as they enter town.  We will be first gathering on Parliament Hill to cheer the riders as they arrive, then moving to Ottawa city hall (less than 1 km and an
easy walk) for a reception and rally.  The rally begins at 4:15 at Parliament Hill and 5:00 at City Hall.  Please plan to attend.

THIS IS AN UNPRECEDENTED ONE-TIME OPPORTUNITY FOR OUR COMMUNITY TO RAISE THE PROFILE OF AUTISM BOTH LOCALLY AND NATIONALLY.  Please support this incredible effort.  For more information on the concert, to volunteer, to receive posters, etc. please contact Anita at (613)829-4723 or by e-mail at anita_acheson@hotmail.com.  For more information on the cycle, or how to become a pledge rider, contact Casey at (613)738-9140.
 

Kerry's Place Autism Services: Workshops in Central West Region
July-December 2003

1st Thursday of month: Social Skills for young adults 16-25 years
Sept 18: Introduction to Autism Spectrum Disorders
Sept 23: (Orangeville) Long Term Planning: Legal and Estate Planning
Sept 27: Long Term Planning: Legal and Estate Planning
Oct 7: Occupational Therapy Workshop
Oct 23: Behavior Strategies
Nov 6: Asperger Syndrome
Nov 20: Long Term Plannning: Personal Support Planning
Dec 11: Introduction to Autism Spectrum Disorders
Dec 16: Recreation and Leisure Skills
Also Education Forum still to be arranged.
Most events are free and to be held in the KPAS Resource Centre in Brampton, unless otherwise stated.  Click for more information about all these events

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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. OAARSN receives many appeals for advice on where to turn for help--with diagnosis and assessment, advocacy, planning for the future, alternatives to approaches that are not working. There are virtually no obvious sources of help for isolated adults with autism and their caregivers.

We know that some adults and their families and caregivers are heroically using what resources they have to achieve some successes with their challenges. Some can report remarkable progress. We invite you, as an adult or caregiver living with autism, to share your problems and your success stories, if you think others might help or benefit.If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page

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